About Caring with Rare
‘Caring with Rare’ is a resource created by carers, for carers – specifically those supporting individuals living with rare conditions. This initiative was developed with the generous contributions of time, knowledge, and lived experience from a wide community of volunteers. Their insights and shared knowledge form the heart of this project.
The initiative is led by three co-principal investigators: Dr. Lynne Lohfeld, Mr. Sam Robinson, and Professor Amy Jayne (AJ) McKnight. Two of the investigators are not only carers for family with rare conditions themselves but also live with rare conditions, bringing a deeply personal perspective to the project.
How Caring with Rare Began
Our Caring with Rare initiative began many years ago, during a time of growing momentum to support individuals living with rare diseases. As progress was made, it became clear that carers -those providing essential, often invisible support, were being left behind.
We were fortunate that the Medical Research Council funded phase 1 of this resource. Across Northern Ireland, we listened to a vulnerable and growing community of carers who shared their experiences and unmet needs. Many didn’t know where to find relevant information, faced financial strain, struggled to communicate within health and social care systems, experiencing isolation, distress, and depression. Crucially, they lacked peer support.
The Unique Role of Carers
Carers highlighted that supporting someone with a rare disease comes with unique challenges, with carers often being:
- Medical navigators, coordinating care across multiple healthcare professionals and complex treatments
- Advocates, pushing for better diagnosis, care, education, and workplace support
- Peer supporters, with one carer poignantly sharing: “Life can change overnight when support is found – it’s transformational.”
- Multigenerational carers supporting multiple family members with rare conditions, sometimes while living with a rare condition themselves
- Researchers, seeking accurate, trustworthy information about rare diseases, support groups, and practical help
- Financial investigators, managing the added costs of living with rare conditions
- Full-time carers, providing 24/7 care with little to no respite, often at the expense of their own well-being
The messages from our local rare disease community were clear: carers needed a dedicated, accessible support tool. The overwhelming request was for an online resource that could provide practical, reliable information—available anytime, anywhere.
Developing the Caring with Rare Resource
Through literature reviews, surveys, conversations, in person workshops, and remote Teams calls an enthusiastic team of volunteers shared their stories, hints, tips, and suggestions deciding a website with core signposting would be an excellent first step.
Working with Fran from the Scarlet Design Agency, our ‘front page’ was born through iterative conversations with carers and professional support teams.
Collaboration and Acknowledgements
We used lots of different communication approaches in lots of different ways to find information that was important to carers.
Our grateful thanks to all the team involved in making the videos that inform this site and to Dr Wendy Austin MBE for kindly hosting our Caring with Rare podcast.
RANE digital helped our QUB team and carer community develop this website through multiple rounds of user feedback.
While there is much more work to be done, we hope you find our ‘Caring with Rare’ resource useful and welcome your support as we seek funding to continue developing support for our rare disease carer community.
